Too much pain!!

Where to start! Since my last update I’ve had a  problem with pain & lots of it. Having to call the palliative care team (my nurse H) I was referred to a consultant at our local hospice who then referred me to the the pain clinic where I saw a doctor who offered to give me a nerve block injection into my pelvis in the hope this would help ease the pain. 3 week ago I went in and had the injection it was a straight forward procedure and was thinking positive that in a few days time I would be ‘pain free’ I couldn't have been more wrong,the day after I had the same amount of pain,by Friday evening the pain was horrendous this continued until Monday,my mum had to call for my nurse,within the hour she was at my house,on the phone to the doctor arranging stronger pain relief,the extra medicines took that edge of the pain but by Wednesday I was in agony pain scoring 10 top of the chart so my mum called the nurse out again,we had to get Chris home too something I don’t like having to do but I was screaming in agony nothing I took touched the pain. The nurse got here just as the pain was easing to about a 7/10, more increased meds and she spoke to the doctor who had done the nerve block and he reviewed the X-rays and noted bruising & inflammation, this could be the reason for the increase in pain. We spoke about if things didn’t settle down I’ll be admitted to the hospice for 7 days for pain control so they could monitor it 24/7, not a route I wanted to take but I’m prepared to do anything so I have some relief from pain. Over the next few days pain was on & off and we spoke about going back to the pain clinic to see if the doctor could do anything else for me. Yesterday was my appointment and I decided to go for the nerve block again,although feeling nervous as I don’t want to suffer that much pain again but I’d rather try this then we still have the hospice option left open if I need to go in. No date yet for the procedure and the last few days the pain has been much easier on & off. 

I’m still having chemo every 2 weeks,I have a scan mid November and I’m back to see jo early December. The last scan showed the pelvic tumours were ‘stable’ but the pesky lung had growth, I’m hoping next time we see jo she’ll have a plan to tackle the lung. 

I’ll update once we’ve had the results. 

Thank you Julie xx

9 year ago.

Yesterday the 9th of April, a date I'll never forget 9 year ago I was diagnosed with cancer it was 9th april 2008 at 1:30pm, I knew as soon as he walked in the room what he was going to say and I wasn't wrong,the rest of the day was a blur full off why me,what's going to happen,I was worried.
9 year on and I'm thankful I'm here to see my children grow. I'm lucky I have chris and my mum who between them make sure I'm not alone at any appointments, scans etc.
Update on how I am
mh leg is back in Bandages, I have a cut on the back of my leg that got infected,that's almost healed then last week the nurse noticed where the original ulcer was last year that has started to break down again, swabs confirmed infection,I'm now back on antibiotics. In January I noticed a tiny hole in my skin about 1 inch under my Stoma, I called the colorectal nurse at the hospital, by the time I saw her it had opened up and was much bigger and quite deep so she swabbed it and a week later I went back and again it was so much bigger, the swabs confirmed infection, the antibiotics didn't help it was just getting bigger each time so I went back to see a different colorectal nurse who said it was an ulcer.
A few week ago I went to see my oncologist Jo and showed her the photos on my phone of how it started and how bad it had got, her thought was is it cancer? A biopsy to see if so, I really didn't expect that. I'm back to see the colorectal nurse on the 13th and see what she thinks, it's so terribly sore, when I move it feels like it's splitting, I'm cleaning and packing it daily with sorbsan. I so hope it's not disease I will keep you updated.
I have a scan date aswell, she wants to know what's going on due to all the pain in my leg into foot,the palliative care nurse is coming regularly to help get it under control she's increased meds I'm on and another has been added, it's much better to how it was a few week ago but I can go from no pain at all to the worst possible pain within minutes.
This week is chemo week I'm carrying on with chemo until I've had the scan and seen Jo for the results but still hope to continue after that but will depend on the scan if the chemo is still working. Fingers and toes crossed!
I'll update again once I've seen Jo for the results.
Love Julie xx

Results day.

Today I received my scan results,I've had many of these days and I can honestly say they do not get any easier. Several sleepless nights leading upto today no matter what you do and how busy you keep yourself it's  still all you think about mostly fearing the worst. Another afternoon appointment but luckily we didn't have long to wait, 'I'm pleased with the scan' the first words that I heard, Jo then went onto say that although some growth in areas,there's no new disease and it's all stable. Phew.... I was so worried due to the increased pain I've been having. This is what I hoped as it means I can carry on having treatment and hope it will continue to slow down the growth.  Can you believe that it's almost a year ago when I started this treatment? ....no me neither!. So for now I'll keep plodding on, I'll have a scan in may and hope for the same result. I feel so lucky that I'm here to spend another Christmas with my wonderful family. Thank you to all who's sent me well wishes throughout the year  and I wish you all a merry Christmas 2016.
Lots of love Julie xxx
(Sorry for any spelling mistakes,I'm half asleep!)

Scan results

It was 2 days ago scan results day,the worrying doesn't get easier, it was an afternoon appointment so in the morning I kept busy cleaning the house. We arrived at the hospital, didn't have too long to wait to get called in, after the usual how are you Jo went on to say the scan had shown growth in all the tumours even the few in my liver had grown,really dissapointed not what I wanted to hear.  now my options are carry on with chemo and just hope after more it will slow down or stop the growth of them but no doubt this is slowing down the healing of my leg or stop chemo but if I stop then I can't have more chemo (the rules of the drugs fund). The room went silent as we all looked at each other, I don't have any other choice than continue with the chemo, so that's the plan another 2 month of chemo then back to see Jo.
 This means no holiday for me but I've finally convinced Chris to take Adam abroad for a week, he really needs a break and I hope it will do him good it's just what he needs, that's my mission today to find them a holiday where they can go and relax.
 I had chemo yesterday think it was number 16 or maybe more I've lost count! I'm also back on antibiotics for my leg it's getting no better and I'm still in compression. As you can imagine with all that's going on I'm not feeling too happy, I'm trying to stay positive but it's so difficult when you hear news you don't want to hear.
Love Julie xx

Another day,another problem.

This week has been nothing but appointments,Monday morning visit to the nurse to get my leg cleaned and dressed, the dreaded scan in the afternoon. Tuesday- Macmillan unit for chemo bloods. Wednesday-long long day having chemo Thursday (today)-went to the nurse to get my leg cleaned & dressed leg is looking much better she doesn't think I'll be in compression much longer,my heel is still not good there's a pretty deep hole in my heel,they treat it with balm cream and a soft sponge dressing and hopefully once the compression is gone they'll be able to concentrate on getting my heel healed. Then the nurse noticed blood coming from the corner of my toe nail as she had a closer look she looked concerned as its very bruised too,she said she would send an urgent request to a chiropodist,before I got home I had the call from them,I have an appointment there today at 15:50 so I've that too look forward to! I'm exhausted today from chemotherapy yesterday it doesn't get any easier. I have my schedule of dates upto Jan 2017 and scan results on the 19th July I just hope & pray chemo is still keeping the tumours stable.
 On Sunday it's that time of year again, race for life day I'll be doing most of it in my wheelchair and I'll walk what I can. A lovely/emotional  day with my family & friends expecially my dear Mavis (Clair) who's done it by my side every year and taking part for me one year when I was too ill to take part. I feel so lucky to have her as a friend. Also I thank all who's sponsored me so many kind people I hope it will all help to find the cure that's so desperately needed,I know I'll never be cured from this dreadful disease, but as long as chemo keeps thing stable then I hope to have many more years ahead to enjoy seeing my beautiful children grow up into adults and grow older & greyer with Chris! that's all I wish for.
Love always Julie
Xx

Chemotherapy

It's been a while since my last blog post,so thought I'd update on how things are. Well I had the port put in my chest a few days before Christmas then chemo started the day after I felt OK with it until Christmas Day I was unwell I struggled on until 4pm then I went to bed. Before I knew it it was chemo day again after a few more doses it was my skin that suffered my fingers & toes they became terribly sore, it was decided chemo would be put on hold until they improved and I was given creams,I then got an infection in both my big toes I went to my GP and was given antibiotics but the day after I got worse so Chris took me to hospital where I was given iv antibiotics luckily it was a short stay as I began to feel better but had to return the day after for an ultrasound of my leg to check for blood clots,luckily no clots...phew!
As my skin got better I started chemo again,it was decided to lower the dose by 50%,then it was the dreaded scan day and the wait for results it was chemo day when we got the results,a mixed picture in that there are some areas that have improved and others that look stable but certainly there is no evidence of progression,we were very happy with that as we were told the 20% chance that the chemo would work so the plan is to increase the dose to 75% and carry on.
Then came along another problem a leg ulcer and a nasty one at that,once again chemo was on hold while I had a week of antibiotics it seemed to improve,chemo carried on again! I was visiting my nurse at gp surgery twice a week for it cleaning,I wasn't getting anywhere once again I was back on antibiotics they didn't help much. My oncologist asked what do we do carry on with chemo when we know it's working or stop chemo and get the leg better as the chemo was slowing down the healing,without any doubt in my mind it was carry on with chemo. After 7 long weeks my leg was no better,I finally got referred to the limb clinic where they did a Doppler test,now my leg is wrapped with a 3 layer compression bandage it's still not looking good and also discovered a deep cut on my heel so that's getting cleaned & dressed too. I'm back at the district nurse in the morning for them cleaning & fresh dressing and that will continue for twice a week not sure how long for I seem to be getting nowhere fast. Chemotherapy Wednesday think this one will be number 15. 4th July is dreaded scan day again & results on the 19th July,fingers crossed  treatment will still be working and I'm hoping for a break so we can get away on holiday in August. Will keep you posted on the results of the scan. Thank you for your continued support.
Julie xxx

Results day

Today results day, a day full of mixed emotions, as we sat in the waiting room waiting to see my oncologist my head is full of worry, the waiting is torture you think of the worst but hope for the best, luckily we didn't have a long wait. It was the first time Jo had seen me having to use my walking stick, I could see the sadness on her face as she mentioned it but I told her It helps me and it doesn't bother me now, we do have a good friendship with Jo after all I've been seeing her for 7 1/2 year now and she knows I'm prepared to take any treatment she can offer me. So after the usual 'how are you' she went on to say the scan does show the tumour in my pelvis had grown, that's what I expected due to all the pain but she was reassured that it's not spread anywhere else, she did mention the 2 nodules in my lung but they've not changed since previous scans so she doesn't think it's anything that we need concern about. The plan is 3 month of chemo every 2 week but first I need a permanent line in my chest, it's called a portacath (think that's how you spell it) that's done as day surgery in theatre, I should get an appointment  within 2 week then start chemo almost straight after. 

  The pain is much better with increased meds but still having trouble sleeping and  pain during the night, the steroids make me hungry I do nothing but eat! I've put on a stone in 3 week, but I feel much better for it and I seem to have more energy too. 

  For now I'm keen to get on with the chemo and hope it shrinks the disease and gives me more relief from pain. 

 I'd just like to thank you all for the well wishes. Don't know what I'd do without you all you give me hope & strength to fight on.

 Lots of love Julie xxxxx